Tuesday, May 29, 2012

Everything you ARE.

(Smiling Charlie, 35 months old)



















On Saturday I took Charlie to go and meet my friend Christie, her husband Ed, and their two little ones, Dani and Elise, and we all headed to the Granville Island water park. It was hot out, and a weekend, so of course it was a zoo. Screaming, bathing suit clad, croc wearing kiddies were everywhere. They have a swing there in the shape of a large disc so its one of the few things at a 'regular' park that Charlie can use. I strolled Charlie up to it to wait our turn. We waited. And waited until another mother asked if we were waiting to use it. I explained yes but that unfortunately, although all the other kids were piling on 5 at a time, Charlie would have to go solo. She gave the kids a time limit, and we were up next. As I was unhooking Charlie's feed and getting her ready to pull out of her stroller I became insecure that two little girls, about 9 or 10, were pointing and laughing at Charlie, I expressed this to Christie who had just walked up to see how things were going. She said, "Noooooo, they're not Cher". I got my back up and got in instant protection mode of my baby, and a future full of gawking and pointing flashed before my eyes. I put Charlie on the swing where she had the time of her life. The two little girls stood in the background waiting patiently to get back on when Charlie was done. When I took her off and put her back in her stroller the little girls, both still staring said, "She's sooo cute!" I thanked them, but still felt uneasy. The girls meant well, but I was just feeling extra insecure about Charlie's differences for some reason, and was worried that they were the focus of peoples attention towards her.

I turned around to see what else we could do. I'd lost Christie and her fam in the kid chaos. I found myself focusing on everything Charlie couldn't do. Can't go through a sprinkler, her machines could fizzle out if they got wet or she could get water in her mouth and choke. Can't go down the watersides, for fear of the same. I stared at a cute little (about) 2 year old girl standing by a faux fire hydrant that was shooting water out. She had her hand in the stream and was just stomping in the puddle that had developed below it. I started getting anxious and a bunch of CAN'T, CAN'T, CANT'S and NEVER, NEVER, NEVER'S went through my head. Can't go down a slide, Can't stomp in a puddle, Can't run through a sprinkler, Will never ever be able to...It just wasn't stopping. The tears came. I turned around quick, and we bolted out of there. I tried to keep my composure as we raced home. My phone rang, I knew it was Christie, I couldn't answer or I'd lose it in public. I texted her back, "Sorry, had to leave, got really emotional, Can't talk. Trying to keep it together." She texted back that she figured that was the case. 

When Charlie and I got home I just put us both to bed to nap it off. I woke up in a strange mood. Charlie's nurse came at 7, so I collected a few of my old CD's and drove out to White Rock to visit with friends. It was nice, and I think I needed the alone time on the road because when I drove home at 11pm I just kept driving...I decided a cruise through Stanley Park was in order. So, I turned my music up, and just drove. It was lovely and just what I needed. I love Charlie for everything she IS, and honestly, most of the time, I really don't see what she can't do, because it's all I really know...but sometimes, it just hits me so hard. I worry for her, and I worry for me. I don't want any of us to ever be left out. But at the same time, sometimes it's so hard to be a part of something that doesn't really 'fit' you either...when you're always the 'different' one. Sometimes I have flashbacks of the dreams I used to have for my daughter/my family and they seems so foreign to me now. Who cares now about which preschool she'll go to or if she'll be rebellious someday? I just want her to wake up tomorrow and smile. That's the current dream, It really is that simple. And it really is the ONLY thing that matters.

I love you Charlie, for everything you ARE. You're everything to me. You're perfect.


Wednesday, May 23, 2012

Happy 35 month birthday Charlie!!

(Charlie 34 months, and mama)






















Well, the marathon went well...It was definitely an experience I'll never forget, that's for sure! And, Charlie's Angels ended up raising $4000 for the Gwendolyn Strong Foundation, so I'm pretty proud of both feats! I'm actually in the process of trying to figure out how to start a 'Charlie's Angels' foundation...more info coming soon!

You might recall that a couple of weeks ago Charlie received her eye gaze system. She was an old pro at it in no time at all but what is even more amazing is that she REALLY started talking around the same time! Charlie is saying a lot of "I wants"now! "I want bubbles" "I want sparkles" "I want Lilo and Stitch" "I want mama" "I want papa". How amazing is that?! It's something new everyday now, she just keeps surprising us! Matt and I are so, so proud of her and regularly discuss our growing love and admiration of the little miracle girl we made. She never stops amazing us. 

Happy 35 month birthday Charlie. We love you, love you, love you!




Thursday, May 3, 2012

Exciting times!


(Charlie and mama at Children's hospital for her bi yearly neuro review)













Last Thursday Michelle Eliot from CBC radios 'The Parenting Project' and 'On The Coast' came over to interview me about Charlie and my blog. It airs tomorrow at 5:20 pm on 88.1FM. This is the link to it as well:




Thank you so much for helping us raise SMA awareness Michelle! 


Well, we reached our fundraising goal for Charlie's Angels! So far, we've raised $3850 for The Gwendolyn Strong Foundation, http://thegsf.org/home/! And they blogged about Charlie's Angels here: http://thegsf.org/blog Thanks to all who donated, and if you'd still like to, here is the link to the Charlie's Angels Facebook page:

http://www.facebook.com/pages/Charlies-Angels/378876302145969

The Marathon is this Sunday, May 6th. I'm nervous! Wish us luck!


Charlie was lucky enough to qualify for an Eye Gaze System recently. Basically it's this really awesome computer where she uses her eyes as a mouse to communicate with us. It blows my mind what technology can do! It also blows my mind CONFIRMING how brilliant my little angel really is. I mean, we always knew it, but now we have proof! She is picking it up so fast. I'll post videos soon. Of course, the second we find out Charlie qualifies for the Eye Gaze, she starts talking more and annunciating her words better...not that I'm complaining! She also just got her standing frame. So, things are getting pretty exciting around these parts! I'm attaching a couple of videos of Charlie in action. Just when you think you can't love her anymore...










Wednesday, May 2, 2012

Hard at work.


Charlie just got a standing frame so she is now STANDING!!! I took this adorable picture of her the other day. I really need to get a life. 




Monday, April 23, 2012

Happy 34 month birthday Charlie-Anne!

 (A birthday stroll to Granville Island with Aunty Shannon and Gracelyn)

















Last spring I took Charlie to a mom and baby get together at a good friend of mines place. Matt dropped us off and I told him I'd call him when we were ready to be picked up. The hostess and all the ladies, most of whom I knew, were all lovely and hospitable. But, I was having one of those days. I just didn't feel comfortable. I felt 'different'. As is the usual case of a good party, it ended up in the kitchen, where all the yummy food was. I joined for a bit, but Charlie can't be held long...she's heavy and she breathes with her tummy, and to be held safely her tummy is usually pressed against my chest, which stifles her breathes. My arms were going numb, and Charlie was struggling to breathe so I headed into the living room where I placed her down on the couch and we sat alone. I was feeling a little awkward and out of sorts so I texted Matt, "Don't go far, you'll be picking me up SOON!" That's when I met Gracelyn for the first time. This perfect little blonde haired blue eyed 4 year old with the cutest little glasses came and sat next to Charlie and started talking to and caressing her. So sweet! She just melted me. I instantly felt better.

Eventually everyone moved downstairs. Most of the kids were running around outside and I was in the rec room with Charlie and a few moms when about 15 feet away, at the door to outside, another little blonde haired blue eyed angel stopped in her tracks, made eye contact with me, and just stared me down. She then came galloping down the hallway, stepping over Charlie to get to me , squashing her feed bag on the way, and propped herself up on her tippy toes, snot dripping from her nose, which usually terrifies me more than garlic or a cross does a vampire, and planted a big sloppy kiss on my cheek, and then turned around and ran away. I was speechless, and my heart was officially warmed to the gills.  I later found out she was Gracelyn's little sister Olivia. OMG! Could these girls get any cuter?! They seemed to sense exactly what I needed. It was definitely one of those days/moments you don't forget.

A few days later I was on Facebook when I noticed that Gracelyn and Olivia's mom Shannon thanked our mutual friend Tschessey for hosting the party. I decided to message Shannon, who I'd never met before that day, and who I actually never even spoke to at the party. I told her how I was feeling that day and how her daughters had made my day and that she was obviously doing an excellent job raising them. I then asked her if I could add her to Facebook so I could check out pics of her little angels. And, that's how Shannon and I became friends. The first time we went for a drink we clicked instantly. She has since helped me raise money for Canuck Place and SMA research and I would now consider her a great friend. And her daughters are seriously little D-A-R-L-I-N-G-S! Gracelyn is so gentle and jumps at the chance to spend time with Charlie. It's so heart melting to see.

Yesterday, for Charlie's 34 month birthday me and Shannon and Gracelyn and Charlie walked to Granville Island. On the way there we walked by a woman, her young daughter, and what looked like her mother. As I passed by her she said, "I read your blog, you don't know me but I used to live where she had her birthday and I've been reading your blog ever since." She made my day and reminded me of one of the reasons I write this blog. I want people to get to know and love my little angel almost as much as do. I want her story to affect them. I want to show people how resilient and strong she is and to learn valuable lessons through her life. And I think it's working. Charlie does it again. And again. And again. And again to people. I've got a a smile ten feet wide across my face right now. So proud of my little red head. SO proud. Happy birthday miracle girl!

Wednesday, April 18, 2012

Share the love.

(Red Fraggle, I mean Charlie, 33 months old)



















About 5 months ago, I happened upon and 'liked' a page called 'The Anaya Initiative' on Facebook http://www.facebook.com/TheAnayaInitiative. The page was/is about a little girl Charlie's age that had Krabbe Leukodystrophy, a rare terminal degenerative disorder. Anaya reminded me so much of Charlie...weak, unable to stand or walk, fed through a g-tube, and using bipap. I'd just happened to 'like' the page about 2 weeks before she passed away, and to be honest it was often hard for me to read the posts and look at the pictures because Anaya reminded me so much of Charlie. I was really, really affected by her story.  Camara, Anaya's mother is a very candid woman who was/is not afraid to bare her soul and share Anaya and her story with the world. Not everyone can do that, but I am similar, so I could really relate. Reading about and seeing pictures of Anaya's final days made me feel like I was having an out of body experience and looking down at my own life. I mourned with thousands of others when Anaya left this world November 13th 2012.

After Anaya's death Camara decided to devote her life to helping families dealing with not only Krabbe Leukodystrophy, but all sick kids. She started working for FundRazr, a company that created a fundraising/marketing app that she used on Facebook when she needed financial support for Anaya's health care costs. She started a new division of the company where she specifically helps families  with sick children create campaigns to help them raise money for their medical needs. About 5 weeks ago a post came up on 'The Anaya Initiative' about Camara needing an intern to help with the campaigns, I wrote back right away, Camara called me a 1/2 hr later, we met up that Tuesday, ended our 'interview' with a hug instead of a handshake, and I've been helping out ever since (even starting my own FundRazr raising money for SMA research which has raised $2400 in less than 2 weeks). 

I went to school for social work and counselling, so this was right up my alley. I'm dealing with families I can relate to and empathize with. I'm helping them create campaigns to help minimize the financial stress in their lives so they can keep the focus on their sick child. That feels good. And, I'm working with a woman who lost a child only 5 months ago, and is still a fully functioning human being. I honestly believe I was supposed to meet Camara, learn about Anaya, and find this path. I spend a lot of time worrying if I'll even be able to breathe again in the possible event of an 'after' Charlie. Now I get to spend time with someone 'after' and she is living proof that it's possible I'll not only be able to breathe again, but perhaps I'll even be able to smile and laugh and work again 'after'.
But, as my friend Ivan says to me REPEATEDLY, "We are here today, tomorrow does not exist yet." And today is good.

Camara has a blog about Anaya, check it out here:


And here are links to a recent campaign that is very close to my heart. Raising funds with Bobs and Lolo for BC Children's hospital. Help if you can!



Love, Love, Love.


A few recent pics. Better hang on to your heart, she'll steal it!